Don't read this if you don't like long, self pity posts.
 

I have had crps for 7 years, I've accepted that I have it and its never going away, but yet accepting it hasn't helped my emotions about it what so ever.
When I was 11, I didn't understand what was happening to me, I just knew I was in pain. After getting diagnosed about a month after the pain started (which I was very lucky to be diagnosed so early) they wanted me to start PT. I remember going to my first appointment, and the man telling my mom that he can't help me because I was in too much pain to handle the exercises, so we went home. By this time it was about a month before Christmas, but my doctor wanted me to go to a program that was 2 weeks in patient and 1 week out patient. For obvious reasons I asked to wait till January because I wanted to be around for Christmas. I was happy to be home, but then a week before Christmas our house got robbed and they stole my Nintendo DS, which being 11 was the coolest thing ever, they also took some Christmas presents that were under the tree. I became super depressed, but for some reason not because we were robbed but because of my crps, Im not sure why, but I was. And that was the first time I felt depression over my illness.
After I went threw the program I was walking again, and things were going back to normal except I couldn't be in gym class or recess (which I hated both anyways) the rest of the 6 or so years after that things were okay, I had flare ups but they never lasted to long and things were good. Then fast forward to today, I've been I'm a flare for close to 8 months now, I had to move back in with my mother after I finally was starting to feel independent, I had to quick my job, drop out of high school, I have lost all my friends, I never leave the house. My crps has spread to both legs and my stomach, I haven't been able to eat or drink in about 2 months, I'm confined to the length of my feeding tube. Not a signal treatment has helped me. Even being on 5 different strong opioids going threw a picc line didn't even affect me at all. Now I just sit here and wait for a call from a doctor, the last call he told me I could be waiting for a month to a year, maybe even years, before I can get any treatment because my insurance is fighting the doctors saying I don't need any treatment. I'm skipping back into depression, I notice how easily I can hide it though...no one notices, and I don't want them to. Im so depressed that I can't even cry, if that makes sense at all. My doctors have to me that I need to prepare myself for a life of being in a wheelchair. I'm only 18...I feel like Ive lost everything. I was so independent, I was out of my mom's house, I had a job, I was making money, I even bought a turtle, I felt so independent I felt like I was finally making something of myself.
When I was in high school, I was hardly even there because I was always staying at home, or in the hospital for one thing or another, I was so jealous of my friends at the time, when I dropped out I only had enough credits to be considered a 9th grader when I should have been in 11th. Everyone was getting their license, planning for colleges, and I was sick, depressed and jealous.
When I started being independent I felt like I was going to make up for my high school times. But now I'm falling behind again. I still haven't got my GED, I still haven't even got my temps.
I feel like a failure, I feel that I've failed my life, and I just want to give up....

I would much rather have this disease twice over than to have even one young person, such as yourself, have to suffer with CRPS. It is no fun to have to determine your victories on a different scale than that of your peers. You are one very courageous young woman. And to address what you are truly going through is a mark of honesty and integrity on your part. I always say due to CRPS that I must get my balance, then stand, walk, run, and fly. CRPS is a Monster, because I want to fly, and it won't even let me get my balance! I wish you well. You are so very important.

Dear Kitty,

I feel so moved by your letter.

It is a sign of real strength to ask for help, as you have here....I think it is time to ask for more help from those around you.

I know what you are feeling...it is not self-pity...you are obviously a very vital, insightful, and intelligent young woman caught in a really bad situation. ....now...just..now. It changed for you once and can again. You have not "failed" in any way....you just got sick. It happens...and, luckily, your prognosis is not fixed in any way....You can recover. There are always second and third chances for the things you feel you are missing...an ocean of time....but now it is just time to focus on getting better....physically and emotionally.

This is not a time to put on a "brave" front. You say you are depressed and can't cry....this is very important information to share with your family/caregivers. . Tonight if you can. You have written...continue to do so....but it is essential to have someone knowledgeable about illness and depression to talk to...preferably face-to-face. So I'm suggesting you tell your family you feel like you're in a crisis....see what can be arranged in terms of getting a counselor to you.... (or via Skype) asap.

In addition, perhaps you can also reach out to a teacher or counselor at your school to help you with this.

Do you have a doctor you trust? It's time to share your feelings....

You are in a flare.....it can change. You've asked about Ketamine I see....well this can be an option for you.....there are other options...and it can be very helpful to have a counselor advocate for you....

Please try and be open about how you feel to get the help you need.....depression and pain are so interrelated....both must be treated...but first you must tell those who love and are treating how you feel....


Sylvie

First off, :hug:

How can you have failed when you are here sharing your vibrant, beautiful self with us? And yes, you are beautiful. It takes a particular diamond like strength to have gone through all that you have. The losses you've sustained recently would overwhelm anyone and make anyone depressed. Not being able to cry is a sign that even your grief is shut away right now. But today was a step in bringing out and sharing that burden. Please do let your family also know how you are feeling.

I agree about counseling even if it is on Skype. Therapists who work with chronic illness and pain can help you with what you're feeling. And there must be some way for you to get the treatment you need. There may be an appeal process with the insurance or a foundation or charity connected with your hospital that could help. I am hopeful that this will get worked out.

Know that we are holding you in our hearts and sending thoughts of healing, :hug:

You hang in there Blazed-Kitty. You are a remarkable and greatly gifted young woman.

:grouphug:

Dear Blazed Kitty,

Your post was NOT a self pity post at all. It was a statement of the facts that you have experienced.

You ARE very amazing. You should take credit for your extreme perseverance and courage.

I can only hope that your prognosis will improve and you can get access to the help you need and deserve. Your life turned around once before so there is hope that you will be able to have the same happen again.

I can tell you one thing for sure. This old lady would never have been able to cope with what you have been through. I am not sure I have ever encountered someone with such strength and courage at your age.

We are here to listen and be of any help and support we can be to you. Wishing you the very best and an end to this flare.

Your story just breaks my heart. I will be looking forward to future posts and ones when you come back and tell us of your improvement and resumption of your independent life that has been taken away by this illness. I sure hope that is your future and soon.

In the meantime, while you fight to regain that life, please keep in touch with us.

First let me echo what everyone else has said, this was not a self pity post. What you are feeling is completely normal! Sometimes it helps to get it all out and who better to share with than us. While some of us may not know what it is like to be a young adult battling this monster we can relate to the pain and the struggles that result from CRPS.

I like to think of this as a "safe space". It is a place where you can vent and know that you will not be judged. We all deal with stress in different ways but it's important to have a outlet as well. Personally the other day I had a good cry and felt better afterwords but there are some times I want to cry so bad but just can't. Everyone here is different yet we are all fighting the same fight and it helps to know you are not alone.

I completely understand what it is like to feel like a failure and feel like giving up. Your high school classmates may have diplomas and a driver's license but you have something they don't have, will power and strength. How many people in your high school can say that every day they deal with one of the most painful conditions known?

A psychiatrist or counselor may be able to help you sort out everything. Grief was mentioned before and they may be able to help you go through the grieving process. Sometimes it may help to have a family member go to a session with you so they can get a better understanding what you are going through and how to help.

Please know that you are not alone and even though we aren't there physically we are still her for you. :hug:

There is no way that I could possibly give the encouraging words that all of the other member have so far. I just wanted to let you know that you are doing truly remarkable. I do not think that I would have had the strength that you do, to be able to go through all that you have had to endure at such a young age.

Your being able to share with all of us some of the struggles that you are facing is truly amazing. Being able to reach out to others can be very difficult for many people. Being able to express some of your pain and emotions with others can be relieving in itself.

Please let us know how you are doing. As you can see, you have a lot of support here for you when you need it.

Hello Blazed-kitty

Thank you for opening your heart and sharing your struggles with us. You have been through so much. I hope you will keep sharing with us, you are not alone, there are many here who care.

zinnia

Thank you all so much for being so supportive (and dealing with me complaining) I have been reading your comments as you posted them, I have just been having trouble posting a reply. It seems like any time I go to reply my brain just stops working. It's honestly pretty difficult to think to reply now I just don't know why. I feel like im.. Emotionless(?) Like I'm dissociating again. Which I have a problem with. I know I need to get a therapist or something like that it's just that only therapist that I trusted doesn't take my insurance Any more. And I don't think I'm am to go through the whole explaining my entire life to some one again, especially since they usually dismiss alot of things that happened in my life. It's like they don't want me to trust them. I know there was something I wanted to say, but I can't remember. Hopefully I remember soon so I can add to this.

Once again. Thank you so much all of you, I'm finding a way to tell my mom about it, I just have to find how to explain it.

Sent from my Nexus 7 using Tapatalk

Dear Kitty,

There is a big difference between complaining and sharing. I think you really needed to let some of that out. This is a safe place to come and do that. We understand and support you. It does get frustrating and the sadness and losses are real. They need a voice, you can't hang on to that stuff all the time.

Please know that we appreciate how hard it is sometimes to open up about things. Most people can't really understand what it is like to go through so much. Even I can't understand just what you're going through, but I know what it is to have your life irrevocably changed by tragedy. We can at least help you carry your burden by understanding what serious loss is like. Come and share sometimes. It's okay.

Thanks for checking back in. It is good to hear from you. But please don't worry about giving a perfect response.

If you decide to work with a therapist, there is no need to re-hash your whole life. They can help you deal with the now and only visit your past if a specific belief from then is impacting you currently.

Sending enough hugs for the day and through the night, :hug:

Dear Kitty I live in Holland and have more or less the same problem but i have found
 

Dear Kitty please dont give up I know how you feel and had more or less the same problem but I have managed to walk again by excercising a little but more everyday which took me a long long time and I have a a very strict dieet and i dont eat gluten anymore
I started whith walking 6 steps a day outside and after 3 days of doing this i walked 9 steps and after another 3 days of doing this 12 steps and so on.When I could walk 60 seconds I added 10% after 3 days and so on.
It was hard but i succeeded. I also rest every afternoon one hour and a half and during that i listen to the cd from louise hay, how to heal yourself or you can heal yourself ( i am not sure because i have the titel in dutch)
That is very helpful against depression and gives you hope again !
I would advise you to find out if you have allergies or if the pain gets worse write down what you have eaten the day before so you can find out if you have a reaction to food.
Also did you know that 33% of the people who suffer from crps do not tolerate gluten?
Also did you take many antibiotics in the past?
Crps can be caused by a leaky gut and/or candidiasis.
You can find out all about a diet for those 2 things on the internet.
Do never give up it can get better but you will have to do it yourself.
I also have had many relapses but then i start all over again.
You are stronger than this disease.
Love
Lia (from Holland)

Relateable
 

Hi Kitty,

Everything you said is so true with the depression. I got hurt in a work related accident October 2017,in December on my birthday i was diagnosed with CRPS of my right hand since then workers comp has given me little to no treatment and is fighting me every step of the way even after seeing four IME’s i get this monster of a illness is depressing i had to start seeing a therapist again. And i get the age thing im a few years older then you i am 22 now who also had a job and now i have to figure out what i can do with one hand because its travaling and its scary not knowing your future or what you can do or beeing deemed disabled so young it sucks! 2016 i had cancer and please im only comparing my battle with cancer to the crps battle so please i hope no one gets offended but my cancer battle i feel like now looking back on it compared to this basically 24/7 pain where even ambien dosnt help me sleep was so much easier. But kitty dont lose hope you are such a young strong woman and we will all find our way in life it just might take a little longer for us. If you ever want to talk ill be here since i just found this site thankfully! Stay Strong ❤️

You are allowed to vent! But seriously!!!

I will be having this "monster" coming September 23 years. It's been quite a "journey" to say the least.

I personally really don't like talking about it and getting it all to the forefront, it's nice and buried in my mind, and I prefer it stay that way. I just deal with my disability day to day, take it one day at a time. IMMHO that's the best you can do.